Debunking Delusions; The inside story of the TAC
by:Natahan Geffen
Jacana Media 2010
review: Eusebius McKaiser
Nathan Geffen's admirably balanced and meticulously crafted Debunking Delusions; The inside story of the Treatment Action Campaign is a proverbial page turner.
The book is a permanent public record of our country's shameful recent history of state-sponsored Aids denialism, and highlights the proliferation of quack remedies for HIV and Aids.
You walk away with a palpable sense that we ought, in Mandela-speak, "never again" to allow a South African government to get away with callous disregard for evidence-informed health policy interventions in the face of a public health challenge.
Geffen tells the denialism story in chilling detail. It is bad enough that quacks may emerge of their own accord, courtesy of delusions of ideological grandeur. But the lifespan of such evidence-averse quacks, not unlike flies attracted to a dustbin promising sustenance, can be lengthened by a culpable political leadership whose wayward beliefs and actions conduce to their existence. The middle chapters are self-contained studies of some of the bigger names in Aids denialism like Tine van der Maas and Matthias Rath, individuals who are not merely destructive on their own but particularly so in the context of a state machinery that legitimised their pseudo-scientific gobbledegook.
Geffen quotes Van der Maas in an exchange about her methodology for testing the efficacy of her garlic and olive oil remedy. Asked whether she had monitored the remedy's impact on patients, she responded, "when you do not hear from patients, they usually are doing well. If they have a problem, they usually phone...".
Besides these remedies not being endorsed by any peer-reviewed, respectable scientific journal, sheer commonsense would suggest that a needlessly dead human being cannot pick up a phone. It is truly mindboggling that supposedly educated folk with reflective capacities, including Thabo Mbeki or Manto Tshabalala-Msimang, could have been enthralled by the likes of Van der Maas.
These quacks are not the cause of political denialism. The relationship between quacks and other denialists is one of mutual dependency. The quacks found a political environment that enabled them to peddle their wares. The political denialists, in turn, were given pseudo-scientific language to justify irrational conspiracies about racism-fuelled, Western-led pharmaceutical attacks on black Africans.
Geffen reminds us, for example, of a former provincial health minister, Peggy Nkonyeni, who once claimed "... that there is this thing called bioterrorism or biological warfare. This is where people can manufacture a virus and target a particular community that will be spread amongst a group of the population".
The ridiculous implication, of course, is that HIV is an invented weapon of mass destruction.
The book includes some honest discussions that give it intellectual balance. There is a remarkable discussion, for example, about shortcomings of the first AZT trial. This trial lasted less than six months and consequently the medium-term impact of the drug was not well-understood. This, in turn, resulted in the initial marketing of the drug being based on an exaggerated set of claims about its efficacy, side-effects, and so on.
Needless to say, treatment for HIV and Aids have come a long way since, and the overall efficacy of AZT and other anti-retroviral drugs are beyond medical dispute.
The book suffers two excusable shortcomings. The minor shortcoming is that it was a literary mistake to try and weave into the overall analysis a subtext about the life of one Andile Madondile.
This was Geffen's attempt to pull a Johnny Steinberg by offering us a bit of narrative journalism. We were supposed to see the human side of the quackery story. But this device does not work. One long soliloquy is placed in the mouth of Madondile. His story does not span the book. We do not get to know him. This tactic was unnecessary. There is a place for that kind of narrative and it's in a project where the person's actual life takes centre-stage in a full study of the human impact of denialism.
Most importantly, the subtitle of the book is inaccurate. As Geffen states: "After nine years of non-stop fighting with the pharmaceutical industry and government, the TAC leadership, worn out and cranky, had an unpleasant internal fight in 2007, resulting in several high-profile resignations.
"Having been involved in that argument, and having the utmost respect for my colleagues with whom I fell out, I will not say more on this."
It is therefore a marketing ploy to describe the book as the inside story of the TAC. That story has yet to be told. But this is not a big tragedy. What the book is actually about is something of greater public importance, a well-written account of a social movement's brilliant role in holding a stubborn state and government responsible for its immoral political actions. Geffen can be more than proud of this illuminating effort.
http://www.sundayindependent.co.za/index.php?fArticleId=5461716
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What you refer to as balanced assessment of AZT, etc, sounds exactly like the issues that Mbeki raised in 2000 already, for which the TAC and Geffen referred to him as a crank and denialist. Even judge Cameron now acknowledges that these concerns were valid and states as follows:
ReplyDelete"Mbeki was wrong, but propositions we had established then weren't as incontestably established as they are now ... So I think these calls (for genocide charges or criminal trials) are misguided, and I think they're a sideshow, and I don't support them."
Now, we regularly are informed that Mbeki’s “denialism” caused 320 000 or 340 000 or more than 300 000 deaths. I would be interested in a study that analysis how many people would have died had Mbeki caved to the TAC and Geffen in 2000 – 2002 and universally rolled out AZT without addressing efficacy and safety concerns and issues regarding the appropriate regime. Would you have similarly condemned them for causing hundreds of thousands of deaths through cell-poisoning and through the creation of ore resistant strains of HIV? More specifically, Nevirapine mono-therapy was scrapped for MTCT shortly after the Constitutional Court judgment’s endorsement of its universal rollout because of a lack of efficacy, safety concerns and concerns about resistance (as government had suggested it would be the case). No one has tabulated how many babies and mothers died because of rash insistence to roll out the drug without defined trial sites, as had been proposed by Mbeki’s government. No one has tabulated how many people have died or are sick (e.g. in the Free State , where the state simply ran out of ARVs and cant cope with the rollout) as a result of the rushed rollout of ARVs in general without having rolled out the necessary infrastructure to support them (as government had proposed). I doubt that anyone will in any event do so, because it would detract from the wisdom of ascribing denialism to Mbeki by those with the moral authority as opposed to the “stubborn state and government responsible for its immoral political actions”.
PS: The HIV/AIDS Policy developed circa 2000 and revised circa 2006 is still in force and is the blue print of the rollout. If it was so terrible and denialist (as suggested by the new health minister and former health minister, Hogan) why has it not simply been dumped? Why is the TAC and the media now happy to praise the states unchanged HIV/AIDS policies when they could not countenance doing so merely 18 months ago (was it simply a question of personalities and not essence)?